Whooshing Sounds-

I used to get it with Migraines but as of two years ago it's constant. How do you deal with it? Well keep busy play the radio in the daytime, TV in the evening, Internet Poker at night and as for bedtime six or seven Larger than large wiskeys do it for me!

I tried the whiskey route. Helped me sleep, but morning was a bitch.

Some people (without a bruit) recommended sound machines like they sell at Sharper Image ($$$). Why pay money for the same sound I've got in my head? It's like a combination of white noise with a heart beat rhythum. Except when the pitch changes. Then it's more like the wind whistling through the roof eaves.

Meditation websites recommend really listening to the sounds and learning to accept them. Sometimes that works for me, others, not so much. My tolerance level changes. Some days I accept it, others are whiskey days.

Lori, If you went to UCSF you went to the home of some of the best, most advanced treatment facilities and doctors for AVMs. Who did you see? Were you in the Interventional Neuroradiology facility? If not, go there. You can check them out at: http://www.ucsfhealth.org/van.halbach Dr Halbach is just one of them, but they are all good. I started with the team in about 1986 at UCLA. A couple years later UCSF lured them away in order to establish it's new program. Dr Wilson was doing the surgeries at the time, although he has since retired. These folks know exactly what they are doing and can help you determine just what you have and how best to treat it. You are very fortunate to be close enough to use this excellent facility. In addition to being gifted medical practitioners I found them to be compassionate and caring people. My favorite, Grant Hieshima, retired about two years after my craniotomy due to complications of his own health. He is a wonderful, sensitive man and helped make tremendous strides in the treatment of AVMs.

Fire Buddy

Hi Lori,

From what I know, pulsatile tinnitus is most often be caused by a DAVF. I have a very involved DAVF from a car accident. It took a year for it to be diagnosed. Few doctors have any idea about this problem. Mine is not life-threatening but the tinnitus is awful. Because of some other health issues I cannot undergo embolization and would have to have a very involved open surgery that may not work and would be risky. I am trying to hold off for now but it is hard. If I knew for sure it would work, I would probably do it, but there is more than a third likelihood it would not work, and surgery is risky.

Also, it is my understanding that only angiography will really show the extent of a DAVF. However, I find it interesting that CT venogram is being suggested from a good institution. I would ask that doctor why that test and not angio. He may have a very good reason for suggesting that to you. Angio. is invasive and CT venogram may be safer, but would it give you as much info. I wonder.

Good luck,

Brittany

It is so weird not to hear it anymore...quiet is really quiet now.

Hi,

I did see Dr. Halbach but he does not take my insurance. Too bad, I really liked him but have to pay out of pocket. I am not sure how much a angiogram oost but I bet I couldn't afford it.

I am confused, several people say seee an Interventional neuroradiologist
doctor then other say see a Neurosurgeon.

To do an angiogram do I need a Interventional neuroradiologist?
Or is it a team of Drs.?

Lori, I am so sorry to hear of the insurance issue. It is a real problem for those in dire need of the best medical help. Fortunately for me, mine covered it.

The neurosurgeon is the guy who cuts your head open and tries to cut out the bad stuff, move things back into place, or does a nip and tuck to improve the general function of things. They are wonderfully skilled people who do things with knives.

Interventional Neuroradiology is a relatively new field. The radiologist takes pictures with X-rays and makes images to more clearly define the problem. Sometimes they place hollow tubes or hollow tubes with special inserts (catheters) into the blood vessels (usually an artery) and inject dye to enhance those images. They make very special catheters to accomplish this task. At some point a brilliant radiologist came up with the idea to inject more than dye. I have had surgical foam, "crazy glue", and special springs inserted into the vessels in my brain. This is the work of an Interventional Neuroradiologist. He does not cut your head open, although he may assist the neurosurgeon by preparing the brain for surgery. He can even help diminish the loss of blood during surgery just as Dr Hieshima helped Dr Wilson save my life during my own surgery.

Interventional Neuroradiology is much less invasive than conventional surgery. The risks are much lower and the recovery is also very reduced. (Think days or weeks instead of months or years.)
For a simple angiogram of your brain you need a neuroradiologist. If you want them to do repairs without surgery you will need an Interventional Neuroradiologist. If you need to open your head to perform the repairs you will need a neurosurgeon.

I hope this helps. Perhaps you could work with your insurance company to get approval for Dr Halbach. It is quite expensive if you pay out of pocket, although you might have some success getting a price reduction. Insurance companies NEVER pay "full boat." They always pay a fraction of the billed amount. It can't hurt to ask.

I wish you every success!

Fire Buddy

I've been looking for a clarification like that. Thank you!

I wish i didn't hear it. I hate it and it drives me insane. I don't notice it when i am busy but if its quiet or i'm stressed then it becomes very noticable. I can't wait to hear the sound of silence again when its fixed.

Thank you so much Fire Buddy! I have looked at American Tinnitus and Pusatile Tinnitus Facebook pages and Whooshers.com trying to find answers and you have just made me understand the difference and now I know what my next step will be.
It has been so confusing for me these last months that I was making the wrong choices and wasting time. Drs, ENTs, have not told me who I need to see.

I do have a PPO but for some reason Dr. Halbach does not take it.
This pulsating, whooshing "bruit" sound in my head is driving me mad. I try masking it, but nothing works. I really do not know how to adjust to it. Mine goes from a deep whoosh to a high shrill sound, only out of my left ear. I need to know if this is just Pusatile Tinnitus or AVM. Thank you again!

Zoe, what have you been diagnosed with? What tests have you had? Are they able to fix it?

I wanted to add this information for the group. I got it from a wonderful website called Whooshers.com
This will help your doctor understand Pusatile Tinnitus. It could be associated with AVM in some cases. I also need to rule this out myself. What I have found is most Dr's have no idea what this is, so if you see a Dr. this might be helpful in some way. You might have to cut and paste the link.

http://whooshers.com/sitebuildercontent/sitebuilderfiles/TopTenPulsatileTinnitusTipsForDoctors.pdf

To all Whooshers....

I wanted to share this information for the group. I got it from a wonderful website called Whooshers.com
This will help your doctor understand Pusatile Tinnitus or the Whoosing Sounds. It could be associated with AVM in some cases. I also need to rule this out myself. What I have found is most Dr's have no idea what this is, so if you see a Dr. this might be helpful in some way. You might have to cut and paste the link.

http://whooshers.com/sitebuildercontent/sitebuilderfiles/TopTenPuls...

Hi Lori - I read your profile, and even though you might not be an AVM survivor, these blogs or boards might lend some info.:

http://www.avmsurvivors.org/profiles/blogs/whooshing-sound

http://www.avmsurvivors.org/profiles/blogs/should-there-still-be-a

This used 2 drive me nuts!

You are most welcome, Lori. I was listening to one of the local Public Radio stations and heard an interview with the actor, William Shatner. He suffers from "normal" tinnitus. At the end of the discussion he voiced encouragement for fellow sufferers. "In time you will not "hear" it, it will still be there, but you will not notice it anymore." I am not sure if this applies to the pulsatile variety, although I do remember that mine bothered me immensely for a long time, then not so much. Maybe it is an adaptation thing, I don't know. It will be interesting to see if anyone in the group can attest to accommodation over time.

Shatner's interview is at http://www.npr.org/2012/02/18/147090053/its-shatners-world-and-he-wants-you-to-see-it

Fire Buddy

I went to see a Dr. at Stanford and he said he wasnts a CT Angiogram.
Of course he wanted and angio but I said I wanted the less invasive test first.
I have to do baby steps. I also asked for an ultra sound carotid artery.

So here is the thing.. I am not sure what the difference is between a CT Angiogram or a CT venogram.
I also now need to see the Stanford Dr because the UCSF Dr does not take my insurance.

Thank You.. this is really helpful.

Thank you... You have so much information for a newbie!

I have had my AVM clipped and an anuerysm clipped as well, but for the last 2 months I have been hearing this noise? If it is not the AVM what can it be?